What I learned about steroids and blood sugar levels from wearing a continuous glucose monitor (CGM) on the ZOE program

[tangocharlie]

I’ve just finished using a CGM for 2 weeks as a paying participant in the ZOE study, which I mentioned in a previous post: healthunlocked.com/pmrgcauk...

Many PMR and GCA patients, self-included, have raised blood sugar (BS) as a side-effect of steroids and other factors. My HbA1c was around the 48-53 mark, which is the diabetes zone. Doctors have been recommending I take diabetes meds eg Gliclazide to lower them, but I’ve been reluctant to add in yet more meds and wanted more info about what actually happens in your body when you take steroids.

Conclusion (for me anyway) What you eat, when you eat and how you eat all have an effect on blood sugars when you are taking steroids.

I found that nothing much happened to my levels for the first 3 hours after taking the Pred. BS rose but only very slightly and stayed around the 6 mmol mark (normal range = 4 to10).

However, in the 3-4 hours after that, BS rose quite sharply. If I didn’t eat anything at all apart from the odd cup of tea with oat or cow milk, or had some non-carb nibbles eg some cheese, meat; my BS rose but stayed within the normal range, say 8 mmol. Levels started to fall naturally about 4 hours after that, ie about 6-7 hours after taking the Pred. If I ate anything with carbs in during this time (4-7 hours after the Pred) the BS would shoot up into the amber or red zone very quickly eg to 11-13 or more. Small things like a samosa one day, or a small pasta salad, or toasted ancient grain roll all took me over the 10 mark.

So, as I take my Pred about 9am, BS levels started to rise about 12-1pm and stay high until about 3-5pm then started to fall. If I fasted or kept very low carbs the graph would continue to fall. If I ate the same carbs as I’d tried before at lunchtime at teatime eg after about 6pm, BS still rose, but not by as much, and generally stayed within the normal zone. Adding extra carbs after a meal eg a scone or a bit of brown rice didn’t cause a double spike. In other words I was able to ‘sneak in’ extra carbs late in the day after other food.

There were a few experiments that caused BS to go beyond normal ranges. One bad spike was when I had a cheese and ham toastie with white bread from Costa about 3pm. BS shot up rapidly and stayed high for several hours. Usually the curve would have flattened faster about that time. The worst day was an afternoon tea with classic sandwiches, cake etc. BS shot up rapidly and stayed high for a few hours. There was a similar result with a picnic – the same type of food.

Info from the ZOE programme predicted that exercise done within half an hour of eating also lowers your BS, but I didn’t really get a chance to test that. Having a salad or green veg as a starter before the main course that included carbs also seemed to help but I only tried that once so can’t draw strong conclusions there.

Another strange thing was that BS levels dropped very low about an hour before waking, in the red zone below 3 mmol. I hypothesise also that steroid levels would be at their lowest around that time and inflammation the highest?

Two weeks wasn’t long enough to do all the experiments I would have liked to do but it was fascinating. At the moment GPs are only prescribing CGMs for Type 1 diabetics but if your BS levels are high and you’ve been told you’re pre-diabetic it might be worth asking. Otherwise the ZOE tests cost about £400.

So to conclude (for me anyway, everyone is different):

• Avoid eating carbs and sugars between 3 and 7 hours after taking Pred. Eating straight after taking them eg with breakfast, didn’t have much effect on BS. In my case though, having a small breakfast of 35g overnight oats, oat milk, nuts and berries made me hungrier around lunchtime, whereas when I usually skip breakfast I don’t get hungry.

• If you really must have something sweet, have it after the evening meal, not as a snack

• If you have carbs, combining them with salad or veg or protein might help lower BS, as might exercise within 20 mins of eating (these are findings from the ZOE experiments - I don’t think I could conclude that on my limited experience)

Eating one meal a day, at least 7 hours after taking Pred ie teatime seems to work best for me. It’s best not to have any carbs as it makes me hungrier and want to eat bigger potions but even then, if say I ate a bit of brown rice or pasta or wholmeal or sourdough bread, generally the BS still stayed in the normal range. For example the same pasta salad that spiked my levels one lunchtime had a much lesser effect eaten early evening.

I was surprised I didn’t lose much weight during this experiment, but then I have been eating low carbs generally for many years now. I lost a lot of weight when I reduced steroids gradually from 22.5 to 15 between March and July but it seems to have plateaued now. I still suffer from a lot of water retention which I think is another side effect of steroids, but this seemed to be helped by low-carb eating too.

Another hypothesis not tested is that the Hydroxychloroquine I take might be lowering my BS and reducing my appetite as they are two known side-effects. But I didn’t get to test that by skipping the Hydroxy. Too much to try in just 2 short weeks.

I generally had less fatigue and brain fog when I ate healthily, though this seemed to be a bit random.

I was hooked on watching the BS levels on the APP so maybe that helped keep me on track – trying to keep my BS within the normal range when I wasn’t doing experiments.

Finally, one the tests they do on Day 1 is to eat some standardised ‘muffins’ at set times. According to Zoe, my results showed a poor response to these, although my graph did stay I the normal level so I find that rating confusing. That didn’t surprise me that my blood sugar levels were affected by sugar which is why and try to avoid sweet things and carbs in the first place. You also do a fingerprick test that shows your blood fat control and mine was also rated poor, which I’m told by my rheumatologist is something they often see with people on long term steroids. Or it might just be because I’m overweight and eat too many ‘bad’ fats eg I love ham and other processed meats. The published research on cholesterol, particularly triglycerides, is very conflicting so I am not worried about that.

I have been following a low-carb lifestyle for a few years now, so low carbs, moderate/higher protein and fats. But this another controversial area, with many doctors still saying saturated fats are bad for you while others say fat is not the problem, sugar and carbs are, and that’s what I believe too. Studies have shown that eating cheese has no effect on triglycerides, yet all the general advice which is probably outdated is to avoid saturated fats. It’s hard to know what is the truth.

Would I recommend ZOE?

I have been eating low-carb and read a lot about blood sugars and the gut biome, so a lot of the info they gave me I already knew. But at the moment it’s the only way to get the Libre3 sensor, so if your GP says you’re in the diabetic or even pre-diabetic range I’d say it’s worth it alone to know how your body processes carbs and adjusting how what and when you eat.

You get a finger-prick test that shows how your body processes fats I the blood. I presume that is a triglyceride test, but it doesn’t say in the Zoe literature. Mine was on the high side, and again this is associated with people on steroids.

You also get a microbiome gut test, which is interesting, and mine was ranked ‘good’, but the science doesn’t know enough yet about how to interpret the results. For example some of the bacteria in my guts is associated with inflammation but is it cause or effect? I already knew that eating an avocado has a good impact on my gut bacteria and is much better for my body than eating a doughnut, even if the avocado is higher calories, but some people believe ‘a calorie is a calorie’. I’d recommend reading books eg by Michael Mosley and Tim Spector, as the lessons included in the ZOE App are too simplistic. For me the best thing about the experiment was to learn that I’m basically on the right track and can control blood sugars without needing diabetes meds. And that if I do want to some ‘treats’ (though I hate that word) - eg some wholewheat pasta, brown rice, potatoes or good quality bread - have them late in the day once your blood sugars have fallen, combined with or after veg and proteins, and only a small portion as an add-on, not the basis of a meal. And eat your greens. Tim Spector says to aim for 30 different plants a week, which sounds daunting but includes things like nuts, lentils and herbs.

Thoughts, comments and experiences very welcome!

[PMRpro Ambassador]

There has been talk in recent years that full fat dairy is NOT the evil it has been portrayed as in the past.

verywellfit.com/how-full-fa....

Have you told Sarah all the results of your study? She has made very receptive noises about diet in the past.

[tangocharlie in reply to PMRpro]

Yes she was fascinated. I stumbled across this recently, one of many studies saying saturated fat is not a problem for cholesterol and other studies showing no link between some types of cholsterol and heart disease and other studies saying statins don't help in any case, all a bit confusing and contradictory and beyond my comprehension. This topic has cropped up in other posts. My triglicerides are higher than normal at about 3 but I'm not worried about that and certainly not goign to take statins. ncbi.nlm.nih.gov/pmc/articl...

[PMRpro Ambassador in reply to tangocharlie]

Statins possibly do something, can accept that. But the lowering of cholesterol is a marker - not the reason.

But the important thing is carbs, not fat. And they are STILL claiming no-one can work out why obesity has shot up in the last 30-40 years. It is the rubbish food environment and pushing of sugary snacks as an essential "to keep energy up" rather than occasional treats - though what is a treat about them is beyond me!

[tangocharlie in reply to PMRpro]

As I said, it's beyond me, but it seems that statins may lower cholesterol but don't help if you already have Atherosclerosis which seems to be what mainly causes heart disease by blocking arteries. I accept HDL should be high and LDL low but the rest is a bit murky. Some studies say we need MORE fats not less. Even the heart specialists often disagree and contradict each other don't they.

[PMRpro Ambassador in reply to tangocharlie]

They ALL contradict each other!! I was sent for a carotid scan by the spare cardiologist - she did it in fact, Very quiet, my carotid is as clear as it was pre-pred. I have a very high HDL - with a highish LDL it makes my total very high.

[Stills in reply to PMRpro]

Milk shakes all round then 😆

[tangocharlie in reply to Stills]

It seems that cheese is good but not milk as it's high carb .....

[PMRpro Ambassador in reply to Stills]

But what is IN the milkshake? Always horribly sweet I find ...

[Hidden]

Thank you tangocharlie! What a fascinating read!If you had gone for a walk mid morning would that have made an impression on your blood glucose at lunchtime causing it to be lower generally until teatime?

Since chatting to you I've been missing lunch and having 2 meals a day but I confess to a bit of yogurt late evening 😕🙃. I'm concerned for my bones and tummy as i don't take meds.

Going to read your post again.

Thank you🤗

x

And I'm so pleased you are able to eat your way healthily through pred and pmr and not have to take meds. £400 very well spent!

[tangocharlie in reply to Hidden]

Interesting question, if I had exercised before the rise in BS would it have helped. Didn't get to try that one, 2 weeks is too short. My hunch is not as it seems that exercise AFTER a meal is best, but I'll have a Google and see if I can find anything. The ZOE website has loads of info in there.

[Hidden in reply to tangocharlie]

Thank you! I can have a look at Zoe if it's open to all. I'm very much aware I'm at risk of TD2. I think the sensors are a good idea. Hope you're having a good day 🤗

x

[tangocharlie in reply to Hidden]

If you listen to the Zoe podcasts I think they give out a discount code. I loved using the monitor, I'd like to do it for longer and would if I could.

joinzoe.com/faqs/gb

[tangocharlie in reply to tangocharlie]

It seems yes, any exercise lowers blood sugars but it's best to say go for a brisk walk about 20-30 mins after eating a big meal

[Koalajane]

thanks for this,

Your blood sugars do the same as mine so quite a while ago I decided to eat breakfast(1 slice of whole meal sourdough with peanut butter) and no lunch. Then about 6 I have my evening meal, usually a salad and full fat Greek style yogurt for dessert.

I was put on gliclazide but taken off after my first review as my sugars went low. I have been in remission now for over 5 years.

I found it interesting what you found out and from testing I found very much the same as you. The only thing I don’t know is what my sugars are before waking but pre breakfast they are usually 4.9 and before my evening meal they are 4,9 too! I do walk a lot.

Thanks again for this report

[tangocharlie in reply to Koalajane]

Tht's interesting, I've just realised my start and end levels are between 4 and 5 mmol too. I've been wondering whether to have a 'good' breakfast of say oats or porridge in the first few hours as it ould be good for my guts and not affect the BS much. However, on the day I did that i was very hungry at lunchtime even though my BS didn't rise much, so it'll probably be best for me to do OMAD and just some low-carb snacks like cheese or meat if I get bored of not eating! I'd really like to give keto another go but think my steroids are still too high (14) and wil stop me getting into ketosis. Can but try ...

[PMRCanada in reply to tangocharlie]

I tried keto diet for 4 weeks while at 9mg. Kept popping out of ketosis, and my cholesterol went up (was climbing up due to pred I believe).

But as you say, worth a try…you won’t know if it’s possible otherwise.

Thanks for sharing an interesting read. You certainly have explored BS levels thoroughly and I’ve always been curious ever since my failed keto attempt. I have an annual HbA1c test along with Vitamin D, and every year it’s the same….5.3.

[Bennijax in reply to PMRCanada]

How did you find out your keto diet failed?

[PMRCanada in reply to Bennijax]

I could not stay in ketosis (blood sugar spikes I’m guessing). Also my cholesterol went up.

[tangocharlie in reply to PMRCanada]

Alll the Facebook groups etc for keto say that initially when you do keto your cholesterol does go up as you are eating more fats, but then it normalises a few months in. It's a point that commonly recurs in the groups. I wonder what your BS has to be below to get into ketosis? Despite lots of reading about it, I don't know.

[Bennijax in reply to tangocharlie]

I don’t know anything about this, will look it up…

[tangocharlie in reply to Bennijax]

Only had a quick Google but it seems your glucose would have to be somewhere between 1 and 5 to get and stay in ketosis. I found that my bs rose by about 4 (fom morning waking of about 4 or 5 to about 8 at its peak due to the steroids, so although that is a spike it's not a very big one. I will give keto another go in a few weeks when life is stable. Ideally I'd need a week of not rushing round etc to get stuck into it. Who knows, maybe you don't get the spike once you're in ketosis as your body is then running on ketones rather than glucose? Oh I wish I could get another monitor to experiment!

[Temeraire]

Thank you for posting this. Very interesting and reflects what I have found myself just doing finger prick bs monitoring. Its inspiring me to do better with my diet. I feel better having live yoghurt, nuts, seeds and a few berries for breakfast. Nibble of cheese/ nuts midday if needed and evening meal. (Here I confess I could do better regarding carbs) I don’t worry about dairy either and always buy full fat yoghurt. I’m cutting out UPF as well so hoping to lose a bit of weight and be a bit healthier. Thanks again.

[tangocharlie in reply to Temeraire]

Sounds a great evidence based plan. I know the theory but often lack the willpower, though the experiments have helped my willpower somewhat. Let us know how you get on

[Temeraire in reply to tangocharlie]

Will do. Thanks

[piglette]

I think it is a good idea to get people to check their health generally. I am sure giving people a free BP Monitor for example could actually reduce NHS costs as they would be made more aware. The same with a CGM.

[tangocharlie in reply to piglette]

I agree, BP monitors only cost about £30. my dad was 'lent' one free by his GP practice. I think CGMs will be rolled out for type 2 diabetics one day but currently I think they cost about £200 a month and NICE etc won't allow that. For some reason you can't buy them privately in the UK yet either.

[piglette in reply to tangocharlie]

The Zoe project managed to get CGMs though. I wonder how much they paid for them??

I also think having hubs which they are doing where people who have cancer symptoms go rather than going via the GP is a good idea. I think they should also have them for muscular skeletal problems. That would really cut down GP general time and mean we could have centres of excellence concentrating specifically on particular problems. It would cut down some of the problems we have with GP queues we have at the moment. When I lived in Belgium you had your general homely GP, but if you had specific problems you would go direct to the gynacologist, paediatrician etc etc. and cut out the GP. It seemed to work fine I thought.

[tangocharlie in reply to piglette]

I think that's a similar system to what they have in Germany and Spain, go direct to the experts. every physiotherapist I've spoken to whether private or NHS say the vast majority of the cases they see are to do with backs, they love seeing something a bit different!

[tangocharlie in reply to piglette]

ZOE is American-led I think, so maybe that's how they got them through? But I rang Abbott who supply the Libre3 sensor and they said it's not availalbe in the UK yet except through endocrine clinics for Type 1 diabetics. I'm sure the drug companies will find a way through, business always wins in the end

[piglette in reply to tangocharlie]

The Zoe Health Study, formerly the COVID Symptom Study, is a health research project of British company Zoe Limited. It was originally called Zoe Global set up by Dr Tim Spector of Kings College hospital in London.

[tangocharlie in reply to piglette]

All the marketing and info seem to come from the American side of the partnership though, a big US university is involved.

[piglette in reply to tangocharlie]

I know there was some Japanese doctor living in the US who had some link with Tim Spector as I was inundated with emails on his nutrition talks which cost a fortune. He probably had some university backing him. Tim Spector does seem to have upped the PR recently he seems to pop up on TV, radio and the press, pretty well daily nowadays.

[piglette in reply to tangocharlie]

I was wrong about the Japanese (he could be Chinese) doctor being part of Zoe. I found this on Linkedin. Jonathan is cofounder of personalized nutrition company ZOE. Starting with an at home test, we identify the right foods for your body so you can improve your health and manage your weight. ZOE runs the world’s largest nutrition science study with Harvard, Stanford and King's College London and discovered that our unique gut microbiome means the same food affects each of us differently.

Jonathan Wolf set up Zoe with Tim Spector. Jonathan is now CEO of Zoe.

[Koalajane in reply to piglette]

I think all type 2 diabetics should be given a blood glucose monitor and strips as it is the only way to know what spikes your sugars

[piglette in reply to Koalajane]

I am sure it would save money too.

[tangocharlie in reply to Koalajane]

And they would be fascinated like I was (I think my friends were getting fed up me going on about it tbh) and more interested in monitoring their health and trying to stay in the green zone. Teach a man to fish and all that

[piglette in reply to tangocharlie]

I have noticed that the GPs are none too keen on patients skipping them. Saying there will be all sorts of hold ups and probkemd if they aren’t involved. They did the same with the Covid vaccines, they were the only ones capable of administering them. In the end they opted out completely and left it up to everyone else. They are always worried things are going to be taken away from them. They need to watch out for AI next!!

[HeronNS]

I don't think it was mentioned in this thread but it may be useful for people to know that consuming protein with carbs is supposed to even out the sugar spikes so they don't go as high. Probably the protein slows down the absorption of sugar.

In fact a quick google indicates that fibre, fat and protein all help to keep sugar in check.

[tangocharlie in reply to HeronNS]

I briefly mentioned it but good to make it clear to others, thank you. I couldn't tell on my limited testing, but the ZOE mass results suggest that is the case. Also vegetables with or before carbs. I'm going to research more about food combining as the evidence is still sketchy. I'll see what the food guru Tim Spector has to say. I'd also like to know whether it's best to separate out ingredients like our ancient ancestors would have done rather than mixing things together. All very fascinating but so much conflicting 'advice'.

[HeronNS in reply to tangocharlie]

Yes, the fibre thing would explain why a salad would be helpful, which I didn't know until ten minutes ago! Haven't been able to eat a salad for two months while waiting for all-clear from periodontist, and beginning to really miss them! (Gum graft, nothing crunchy or crisp. Follow-up appointment Monday, can hardly wait!)

I think the real takeaway is to ditch all the manufactured foodlike substances modern Westerners are fed by the food industry, and eat real food, minimally processed!

[tangocharlie in reply to HeronNS]

Absolutely, that's the new buzzword and movement, trying to get people off ultra processed food, but it'll be slow progress against the mighty 'food' industry. Gum gradt sounds horirble, what's caused that?

[HeronNS in reply to tangocharlie]

When I started pred it appears to have caused some gum recession, and coupled with my lower teeth moving (dentist said this was "normal," but he should have done something to at least slow it down) it looked like I'd eventually lose my lower front teeth, Hopefully they will now last as long as I do. Unfortunately an upper front tooth which got broken in an accident over twenty years ago (root canal and repair) is now being resorbed by my body and will break off, so that has to be extracted and I'll have an implant. So, this is the summer of the teeth for me, two completely unrelated issues. What makes it worse is they dropped masking mandate in medical setting after I'd started this adventure, so I'm not too pleased about that. The clinicians themselves continue to be masked (they have been since AIDS) but front desk staff and patients don't have to be, I will be except when I can't, and have the appropriate mouthwash and nasal spray to reduce viral load, but my last vaccine is about five months ago and there are so many new variants now.... 😱

[Bennijax in reply to HeronNS]

It doesn’t need to be a raw crunchy fibrous salad - I cook green beans or chard and when just soft enough I put these greens in the fridge lightly coated with good olive oil (not much needed). Then I eat these at either breakfast with 7 minute boiled eggs, or some goat/sheep feta cheese and sprinkle of sea salt. When I was growing up in the late 1940s/ 60s my family always served either a veg soup or a veg salad with dressing (containing vinegar) as a ‘starter’, and when we went out to a restaurant to eat, it was always the salad first too. I think we have forgotten that this is probably a good way to be healthier. Salads can be made with lightly cooked vegetables.

[HeronNS in reply to Bennijax]

I should be able to eat real raw vegetables again in a couple of days. I'm sure your ideas are great but I actually hate preparing food and it looks like work! Now, if someone else would do it for me....

[PMRpro Ambassador in reply to Bennijax]

Any decent German hotel/guesthouse has salad stuff on the breakfast buffet - not lettuce but tomatoes, cucumber, radishes,

[Bramble2000]

I’m starting the Zoe programme in September. My diet is terrible so I’m really looking forward to doing it. I’m also going Ultra Processed free.

[HeronNS in reply to Bramble2000]

You will probably start feeling better which will help with your withdrawal from the ultra-processed!

[Bramble2000 in reply to HeronNS]

I hope so because I feel rotten 🫤. Is it complicated? Could you explain the process? Thanks

[tangocharlie in reply to Bramble2000]

You'll love it. The most impotant bit was wearing the lucose monitor on your arm for two weeks. This sends constant readings to an App on your phone so you can see what happens when you eat something. For me, the info and quizzes that went with the App were too generalised, so if you haven't already done so, I 'd say tread some of michael Mosley's books eg the Blood sugar diet because he explains how blood sugar control should work in your body and why it goes wrong and you get diabetes. He also did a book called clever guts which was one of the first to start looking at gut health. Also Tim Spectors books, but he is alwys changing his mind about things and being an excellent scientist, says that for most things we just don't know yet!

[Bramble2000 in reply to tangocharlie]

There’s no point having a mind if you can’t change it 😆. 😊

[Koalajane]

I think a lot of the problem is that processed foods are cheap and easy although not good for you and with the economic crisis we are in it is no surprise that more people are getting diagnosed with type 2 diabetes

[HeronNS in reply to Koalajane]

But I think they are not that cheap. They don't satisfy the appetite so one eats more, and they cause health problems which cost in several ways. One of the problems is that "real" food takes time and effort to prepare, and often is only available in large quantities (e.g. a bag of flour) which is difficult for single people or older people to afford and then to actually eat all of it.

[Koalajane in reply to HeronNS]

I’m okay with salads and they are quick to,prepare!

[HeronNS in reply to Koalajane]

True. but they may actually be one of the good foods which are expensive. Or soon will be what with failing crops.

Speaking of processed food, I don't know if home baking counts? I have just learned about "scuffins" and am encouraging my baker d-i-l to experiment and test them on me.

[Sophiestree in reply to HeronNS]

'Scuffins'????

[HeronNS in reply to Sophiestree]

A cross between muffins and scones! Allegedly they have the moist texture of a muffin inside, but outside they are like scones. There was an article in our paper and I clipped it and gave it to my d-i-l. She makes her living as a baker of such treats.

I wasn't able to access the newspaper version, but I think this must be the origin (a baking mistake!):

mykitchencraze.com/blueberr...

[Sophiestree in reply to HeronNS]

Yum

[PMRpro Ambassador in reply to HeronNS]

Look like tarted up rock cakes to me!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

When our local garden centre was independent - the chef used to make scones that looked like rock cakes -so not dissimilar to those pictured. Have to say they were delicious….

[HeronNS in reply to PMRpro]

I've never heard of rock cakes....

[PMRpro Ambassador in reply to HeronNS]

bbc.co.uk/food/recipes/rock...

Almost the same ingredients as sweet scones but with mixed spice usually and no rolling and cutting, just piled rough heaps on a baking tray so children had no problem making them.

[Bramble2000 in reply to PMRpro]

Oooooo Rock cakes. I love rock cakes!

[tangocharlie in reply to Koalajane]

I've been living off chicken casesar salad for months but the Zoe App didn't give me many points for it. Yes it's low in carbs, if you don't have many croutons, but not that helpful to gut health as little fibre in it. Vegetables have a lot of fibre, but not lettuce. It gives it about 30 zoe points compared to say an apple or avocado which would give you 80-100 points. Another tip I picked up smewhere was to sprinkle quinoa in salads for extra protein and fibre.

[Koalajane in reply to tangocharlie]

I add nuts to my salad and an avocado most days

[Bennijax in reply to tangocharlie]

and there are chia seeds.....

[HeronNS in reply to Bennijax]

For a while I was buying a mix of chia with a couple of other things. Had to soak in milk overnight to make it edible. Chia seeds the worst. I know they're supposed to be very good for us.

[Bennijax in reply to HeronNS]

Flour can be frozen , that way the bag can last a long time.

[HeronNS in reply to Bennijax]

Yes. For poor people they can't afford the quantity, although it would be beneficial if they could buy in quantity. And also had the storage space. Caught between a rock and a hard place.

I'm reminded by conversations like this how very privileged I am!

[Mary63]

I did the Zoe experience a year ago and found it fascinating and very useful. My hba1c has always been good (maybe because in the 8 years of PMR I have been consistently pretty low carb and only eat sugar once at the weekend.

My blood sugar testing through Zoe was v interesting though. When I did eat carbs (bread pasta rice etc) my blood sugar shot up to 13. But if I I ate the same thing at the end of a meal my BS remained fairly flat. The takeaway for me was not to have fruit as a snack. I was mainly using berries with full fat yogurt mid afternoon. This raised my BS to 12. But if had the same thing as a dessert it had little effect on BS. When I had a mango between meals my BS soared to 15.

When my blood sugar did go high I very quickly suffered a large drop which made me feel hungry again

My blood sugar regulation was rated as ‘poor’. My blood fat regulation was ‘bad’. Saturated fats raised my levels high and they stayed high for 12 hours. For this reason I was advised by Zoe to reduce my saturated fats and to use more good fats (olive oil, avocado etc) So I rarely have butter now and eat red meat only once a week

The reason I did Zoe was because I had episodes of angina and stents two years ago and wanted to know why this had happened.

I have also been a lifelong IBS sufferer. I have been following Zoe advice about improving my microbiome for 18 months now. My first test of microbiome was done when I had been following Zoe advice for 6 months and I have just had a second test done through Zoe, which showed huge improvement. Very few ‘bad’ bugs and a huge proliferation in the ‘good’ bugs. This has coincided over the last year with a massive improvement in my gut symptoms to the extent where I consider myself IBS free.

So all in all a good experience for me.

[tangocharlie in reply to Mary63]

Fascinating, thanks for sharing. Yes I found I could sneak carbs in after a meal better than eating them on their own. One evening I had a packet of chocolate buttons about an hour after dinner but my BS continued to fall, not even a blip. Having had a low carb moderate protein and high fat mindset for years I've got used to having a fair bit of cheese, olive oil, avocado etc. On the evidence I've seen so far I'm not going to cut cheese. I only have red meat about once every 3 or 4 weeks and eat far more fish than I used to. In fact Tim now says a bit of cheese say every other day is good - he says in one of his podcasts 'if it goes off it's good', even cheap supermarket cheese, which I'd have thought comes under the ultra processed category. So glad your IBS resolved. I kept a detailed diary of what I eat and different symptoms and worked out foods that are my triggers - even though some of them are pickled and fermented things which they say would be goood for our guts. Mine seems to be histamine intolerance and all those foods are high histamne. Just about anything acidic including yoghert is high histamine. My gut test said good, and I've done others in the last few years which have also been good eg Chuckling goat. The results ZOE sent me about the gut results are a bit vague compared tothe Chuckling goat ones but I will have a more detailed read.

[marionofnorwich]

That is all very interesting. I have lowered by carb intake but i wouldnt say that i eat low carb although it is late at night when i get cravings. I have recently been doing the 16:8 fasting using an app called Simple which has helped reduce food intake overall but i generally eat later around 8-8.30pm so then fast as long as i can the following day. More or less given up toast now and with it any form of jam/marmalade but for example last night had wholemeal spelt spaghetti with prawns. Not a huge portion but mainly carb. The night before was home made pizza ( to be sociable with family)? I have lost a few pounds having found weight loss really stubborn. The fasting has stopped me eating chocolate pretty much. It is all a bit of a shame as i have always loved entertaining and i am having to turn myself off food generally. On 15mg of pred i gained 1.5 stone within three weeks and almost got yo 15 stone at heaviest. Came down but then stuck at 14.5. Currently 14 after two or three weeks of Simple so will continue but don't feel i am eating enough veg at the moment as not eating at all seems easiest so tends to be a cup of muesli with some oat milk, yoghurt and fruit. Once i start eating i then want more but am controlling that as best i can so is usually a breakfast type meal in the afternoon and a 'normal' meal in the evening with nuts if i need something else. But moreorless elinited snacks. This is informative so now i will try and adjust times. Also tend to take my pred late, around 11am. Not sure why. Just seems to work out that way. Thanks for sharing this @tangocharlie

[PMRpro Ambassador in reply to marionofnorwich]

"i am having to turn myself off food generally"

I am off food generally at present - too hot probably! But that is the wrong way round. Never think of "I can't eat ..." and turn it round to "what can I eat and what will I choose today ..."

I eat large amounts of salad and above ground veggies - when I can be bothered so by default it becomes salad! But I get myself high quality fish and meat that I might NOT eat under normal circumstances but which I enjoy. A friend showed me how to cook such a simple prawns, cream and spinach dish - it on its own is lovely, no carbs needed.

Your muesli solution is majorly carby - weigh it and work it out! I can pile a plate with non-carb foods I love and run out of space to tuck it away! It is all about mindset ...

By the way, if you want to tag someone, when you have typed the @ and then start on the name, a list of matching names appears. You must select from that list to create the link so they get a notification - it turns blue tangocharlie

[marionofnorwich in reply to PMRpro]

Thanks PMRpro I do normally do that (tag people) but was on my phone and still in bed so probably missed the target! Yes, all you say is sensible. I do weigh the muesli (40gm) and don't have it every day but was advised to eat oats for heart health (porridge actually) by the rheumie so sometimes I do. I do love vegetables but think I am a carby person by nature when it comes to lentils, beans, brown rice etc as a base for salads. Just lettucy salad doesn't really do it for me, at least not just that. But yes, fish, eggs, avocados, feta, tomatoes, aubergines, courgettes are all on my list and over the last couple of years have weaned myself off anything like sausages, ham, bacon, all gone out of my thought process, same with pastry, biscuits etc, although occasionally a pie creeps in. Fruit crumbles occasionally though trying not to accept people's harvest of plums etc now. I am not so bothered about potatoes, happy with sweet potatoes and also 'whole' alternatives. We don't live near shops so I need to get out more to buy cabbage, broccoli etc, the things that deteriorate quickly. I had to give up the allotment sadly as I just couldn't manage it so wasnt growing stuff anyway. I love a salad made with puy lentils, beetroot, onion, grated carrot, balsamic vinegar and rosemary but guess that is quite carby too. Overall I eat healthily but there are carbs involved so steadily whittling them down. The Simple app helps actually as it makes me conscious of what I am easting but without actually counting, and overall I am eating less

[PMRpro Ambassador in reply to marionofnorwich]

Sweet potatoes are as much carb as ordinary spuds.

And what deteriorates quickly about cabbage? They keep a LONG time in the right conditions and I keep cauli and broccolli for a couple of weeks in my new fridge - much colder than the older one since it works properly!!!! If the cauli and broccolli starts to get a bit soft - trim the stem and put it in water - perks it up no end. Frozen keeps a very long time - and is just as good nutritionally.

[herdysheep in reply to PMRpro]

Didn't know that about tired broccoli etc - thanks for tip. makes sense when you think of the effect of a cold shower - but not too keen on them!

[HeronNS in reply to herdysheep]

I discovered that limp kale and even limp lettuce, although I hardly buy lettuce now, will nearly always plump up to a state of freshly picked condition if left for a while in a pan of cold water. I find it helpful to break the thick mid rib of the kale to encouage more absorption, but I think it would probably work anyway.

[PMRpro Ambassador in reply to HeronNS]

I have washed and stored the outer part of this week's lettuce - what's left will have the base trimmed and stood in water to perk up tomorrow.

[Bennijax in reply to PMRpro]

Broccoli and cabbage, I love both. I make light salads from these by first cooking until el dente, then serving Japanese style cold. There are many ways to get more veg into the diet. My challenge is occasional but harmful major spikes in blood glucose from my cravings which drive me to gobble down certain chocolate indulgences. Not often happens, but when this happens my reward is I get skin and inner ear itching, rash, blurry eyes, and feel crummy.

[PMRpro Ambassador in reply to Bennijax]

I actually like broccolli and cauli raw but often roast them in the oven/

[Bennijax in reply to PMRpro]

Me too, love these roasted

[HeronNS in reply to marionofnorwich]

I like sweet potatoes because they are a good source of Vitamin A. While my gum graft has been healing they've been one of the foods I can happily eat. As cooked carrots are not, never have been, a favourite food of mine they've been out of the question for two months although usually I eat them raw in salad several times a week. Also the calories in sweet potatoes are most welcome as I was not able to maintain my already rather low weight during this time when nuts and seeds are off the menu.

[tangocharlie in reply to marionofnorwich]

'Eat more veg' is my mantra. I aim for about 7 portions a day so even if I slip I should still get the 5 I'm supposed to have. Every meal I think what other veg can I have with it and often have a starter of a plate of green veg with some butter or cheese or sauce. and based on the ZOE evidence that would also help to balance out higher carbs. So if you take your Pred about 11 and if your pattern is the same as mine and koala Janes, you could probably eat low-ish carbs til about 2ish, then the danger zone would be between about 2 and 6pm. We used to be told take Pred early morning but for me it does't matter when I take it the insomnia is still there, so you might as well take it at a time that suits the BS as you are doing. Ihope you continue to lose weight - let us know how you get on. I remember when I first started on Pred, 11 years ago, I piled onthe wieght and was complaining to my GP. He said it was because Pred raises your appetite so you eat more which I strongly denied. The amount of gaslighting we have to put up with from doctors ...

[PMRpro Ambassador in reply to tangocharlie]

Though I suppose the blood sugar rollercoaster in most patients does look like increased appetite. And it tends to be carbs/sugary stuff they crave to bring up the BS level.

[OldPenny]

Wow! Thanks for letting us know your experience of ZOE, TC. I, too, am experiencing the programme currently - and feeling the benefits, despite fighting the adrenal fight. 😵‍💫

Trying to stuff in and swallow 3 of those bland muffins in 15 minutes was certainly a struggle, but now seems worthwhile.

I won't expose my results as I don't feel that they are pertinent to anyone else.

The subjects that you have mentioned, such as good/bad fats, intermittent fasting, meal planning etc. are best understood, in my opinion, by listening to the specific ZOE podcasts. There is an excellent range now by their medical experts that gives you the latest research on gut health and the 'safest' type of (natural) foods to eat if you want to avoid many common diseases.

Of course their mantra is still " Eat more plants!"

OP

[Bennijax in reply to OldPenny]

What is a bland muffin? What if needing a gluten free bland muffin?

[PMRpro Ambassador in reply to Bennijax]

I imagine being coeliac is an exclusion within the study protocol as a g/f muffin would be rather different.

[tangocharlie in reply to PMRpro]

That question has been raised,, it currently excludes you but they say they're working on it

[tangocharlie in reply to OldPenny]

I'd be interested to know if you saw similar patterns to me and others? Good tips about the podcasts, I'm, working my way through them. 'Eat more nuts' is another mantra I've picked up from one of them - he counts them as plants

[Koalajane in reply to tangocharlie]

I am a big nut eater with my salads!

[PMRpro Ambassador in reply to Koalajane]

Me too - although more seeds with salad, almonds, hazelnuts and now walnuts are in a tub for grbbing any time. I had a visitor recently who likes walnuts and she bought a big bag, I got the leftover when she went home and although I;ve never been keen, there were enough there to last long enough for my tastebuds to accept them!

[Koalajane in reply to PMRpro]

I love cashews, almonds, Brazil nuts, walnuts, hazelnuts. Seeds too but they tend to make me loose!

[PMRpro Ambassador in reply to Koalajane]

Brazil nuts - no! Love cashews but they are expensive!

[tangocharlie in reply to PMRpro]

Pecans are expensive here, even in Lidl

[tangocharlie in reply to Koalajane]

I'm eating all diferent ones, the only ones I can't eat are walnuts which are high histamine. A handful of nuts when I get hungry mid day with my daily Baby Bel or if i am desperate for something to eat. I used to have things like slices of ham in the fridge to nibble on but am trying to wean myself of processed meats.

[Judyliz]

I too have signed up for The ZOE Study for 4 months starting next month.Tim Spector is often on radio 4 and quoted by other luminaries, so I am looking forward to the process.

I think I eat a mainly healthy diet and am not overweight but like most of us could do with guidance

.

Michael Moseley is inspiring, however I have become a wee bit amused by, "Just one thing". I have a good friend whose comment was, "My day is full of his just one things, I have no time for anything else."

My reason for enrolling on the Zoe Study is because of a long term digestive problem probably caused by the steroids.

I was diagnosed with PMR in May 2016 and GCA in September 2016. The consultant started me on enteric coated prednisolone and I had no problems with my digestive tract and had never had a tummy upset in my life. After some months a new GP repeatedly refused to prescribe the coated prednisolone and within 3 months I was in agony.

I had two A&E attendances, the first for severe gastritis - the A&E consultant asked the GP to change his mind - and the second for oesophageal spasm.

Unfortunately, I am someone for whom nothing but omeprazole works. I have tried for a prolonged time on famitidine and OTC medications to no avail. I feel dizzy, nausea, and pain.

I recently had a gastroscopy, the inflammation between my oesophagus and stomach was visible. Scarily bright Red.

I am hoping The ZOE Study will help me look at other aspects of my diet but think it might not be part of their remit. Either way I am sure I shall learn a lot.

Thanks for you post TC.

PMRPro attached a good paper yesterday about the difficulty of getting off omeprazole, it is written by a younger man who is struggling too.

[tangocharlie in reply to Judyliz]

Hae you tried putting yur Pred in gel capsules so they bypass the stomach and are absorbed further down? I do dthat so I don't need to take stomach protectors, though as I take Cimetidine for histamine intolerance anyway that acts as a stomach protector anyway

[Judyliz in reply to tangocharlie]

Thanks TC, as far as PMR/GCA goes I think of myself as one of the lucky ones. I was able to completely stop the prednisolone in January, and have been steroid free for over 6 months. I was taking it for just over 6 1/2 years. I have had no symptoms of either condition since stopping, I managed my taper very slowly and, I think/hope successfully.

I did buy the gel capsules and used them every day. Unfortunately, in the 5-6 months prior to starting their use, the damage to my stomach was done. I have high hopes of learning a different way of managing the symptoms and The ZOE Study is high on my list closely followed by the Fodmap diet.

Again many thanks for your interesting post.

[Pixix]

Thanks, very interesting. My BS shot up just 3 months after starting pred (already overweight from previous steroids for lung infections). I did the keto diet for 8 weeks, lost a stone & BS was OK, & no drugs needed. I do take a statin. But for familial reasons…Mum was tested, hers was 12, she was slim, & ate all the right things! My aunt was tested, her result was 10, & she wasn’t that slim, & loved sweet foods. Aunt developed Type 2 diabetes, & was on the point of having to inject insulin. Mums doctor suggested I be tested, & my brother. Mine was 11, but I’d had no symptoms. I was put onto a statin, & further tests, over a period of 40 years have been fine. My Mum had a stroke, & died 3weeks later. Recently, my Aunt had a stroke, they operated to remove clot from her brain (age 91), but she died a week later. However, she had been taken off her blood thinners. Just for info. I taje my steroids between 2 & 3am, eat no breakfast,do have carbs at lunch, small roll & 1 homemade biscuit. That meal needs to change! Dinner at 7pm, rule is pudding only 2 nights a week (but that gets broken). No eating between meals. Thanks for writing that up, could it be in FAQs, or a saved post…somewhere?! Please? S x

[tangocharlie in reply to Pixix]

Interesting, so you managed to do keto and presumably get into ketosis even while on Pred? That inspires me to give it another try. Sorry to hear about your family history, I'm sure my perspective would be different in your situation. I'm lucky no heart problems for me or anyone in the family. All my indicators good, GP says nothng to worry about. Just wish the PMR would pack up and go away. bread seems to cause high sugar spikes no matter when you have it, so I will rarely have it. Ditto pasta, even if it is wholewheat. But I know if I do want to push the boundaries it's best to do it in the evening and after a meal nd with plenty of veg rather than lunchtime. Looking back it was obviously the traditional lunchtime sandwiches that got me fat even before PMR/Pred days

[Pixix in reply to tangocharlie]

Yes!! I was very strict with it, but so determined, having watch my Aunt struggle so much with diabetes! It was only 3 months into PMR. I started on15mg, it was good, but not excellent, so went up to 17mg, at which point it was great. I was down to 15mg when I got the results, & read up keto ‘everything’ for a week, purchased things like coconut flour, alternatives to sugar, & ploughed into it! Yes, if you have familial known issues it makes you realise you need to do something, even if you don’t want to! Both my parents had atrial fibrillation, too. It’s so difficult to keep finding alternatives for lunch, especially when, if it’s just a finger roll…our norm, then David will make them quite happily…but if I want to eat something else it’s up to me to get it (which is quite fair, I may add!) I was tubby from12 onwards, always struggling with weight…dieting etc. I used to lose to go on a holiday…& once we hiked 200 miles of alpine walks in 2 weeks & I still put on half a stone (May have been muscle, but I doubt it!) good luck, it’s all tough going stuff! S x

[Sophiestree]

I was so confused to all the references about muffins etc, until the penny dropped that that is what they ask you to do.... I would be very nervous to eat carbs right now but definitely interested in how the spikes happen.

[Miserere]

Thanks so much for reporting all this - fascinating.

I tried three days of carnivore with interesting results. Then I reintroduced minimal veg as I struggled to stay on just meat/eggs/fish with a little cheese. However, I am returning to it as joint pain from osteoarthritis seemed much easier and as soon as I added some veg in the pain got worse again. I shall try to do a week of carnivore and then re-introduce one vegetable at a time - I just have a feeling tomatoes may not suit me but I need to do this systematically. One thing, I expected my digestive system to sieze up but quite the reverse - slightly worrying initially but apparently it's normal for the first week or so.

[tangocharlie in reply to Miserere]

I did read up on the carnivore diet a few years ago and lurked in some Facebook groups. Some people say it worked where all else failed. I like the sytematic approach you're taking. When I had all sorts of strange reactions I was trying to fathom out I kept a detailed diary, food in one column and reactions in another. Then I looked at all the things that caused me grief and tried to figure out why. I came up with histamine intolerance and have written posts about it. I can't eat raw tomatoes but can have passata or tinned tomatoes. It might be the skin that's the problem. Actually I can have the odd small plum tomato (but not cherry tomato) if it is still orange and not fully red. Some say they're inflammatory as are other nightshades, some say they're a superfood and vital part of the mediterrean diet. I think it depends very much on the individual.

[Bennijax]

TangoCharlie, well done! thank you for this very impressive, detailed post. Reading it I'd say you are in a better place than a few years ago.

Have you read the Glucose Goddess yet? her advocating that we use vinegar to help flatten the glucose spikes before eating carbs/sugars?

[PMRpro Ambassador in reply to Bennijax]

diabetes.co.uk/news/2020/au...

Not the BIGGEST study in the world ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Was listening to local radio the other day [for traffic updates] driving to son's - informal discussion about apple cider vinegar between 2 presenters... apparently one has a book called 200 uses for ACV - but they could only remember 2...🤦‍♀️.

Don't often listen to local radio... now I know why ...

[PMRpro Ambassador in reply to DorsetLady]

I use BBC3 the UK to get the flashes, Our local radio is acceptable but music except at lunchtime when it isn't too drivel-ish. My car radio is set up for the best alternative all the way from here to Calais or wherever. In Holland I just suffer - understanding Dutch on the radio is beyond me! Will be interesting to see how the computer in the new vehicle works for that ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Good, I hope....

[Bennijax in reply to PMRpro]

GG recommends any vinegar except balsamic which contains too much sugar, but she favors ACV too. Her recommendation is to start the day with a tablespoon of it mixed in water and sip this throughout the day, use it in salad dressings too. Vinegar, also the order in which we consume has a bearing- eat vegetables cooked or raw first, next eat a protein portion such as eggs, fish, meat, cheese, tofu, only then eat carbs. I find this hard to remember to do, but the method seems to flatten glucose waves.

[PMRpro Ambassador in reply to Bennijax]

The study suggests the vinegar with cheese before bed ...

[Bennijax in reply to PMRpro]

Not so appetizing …..

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Recipe for being up half the night with indigestion…..😳

[tangocharlie in reply to Bennijax]

Not heard of that, sounds plausible, after all vinegar cleans off fats and stains doesn't it, but unfortunately I can't eat anything pickled or fermented so vinegar is out

[herdysheep]

Many thanks - a fascinating read

[Appledore6]

Great post thanks for such good detail. 👍

[Mfaepink1973]

This is fascinating, thanks so much for sharing. I couldn’t understand why my BS rose from 5.3 to 9 after 1 40% less sugar biscuit yet didn’t rise as much as I expected after a portion of mashed potato with a meal. I’m thinking of getting a CGM so I can try to work out what I can eat and when as I’m getting really frustrated half starving myself only to have BS going sky high anyway!

[PMRpro Ambassador in reply to Mfaepink1973]

If you cut processed carbs and eat low carb veggies and protein and fat in meals you don't have to half starve yourself to moderate BS.

[tangocharlie in reply to Mfaepink1973]

Combining carbs with protein and fats seems to help lower BS. That would also follow the theory of lowering the glycaemic load eg if you have beans or cheese with a jacket potato. The only potato I had in the two weeks was a couple of cold new potatoes made into kartoffelsalat with mayo and it didn't have any effect on bs to my surprise. But I don't know if that was because I ate it in the evening or the tuna and green beans I had with it cancelled some carbs out or because the potatoes were cooked and cooled which changes their compostion and makes them lower carb. I'd love to do the monitor a bit longer to experiment more with thing like that.

[tangocharlie in reply to Mfaepink1973]

Food combinig, eg protein and carbs together seems to help lower BS, as does the time of day you eat and the exercise you do. Also the composition of potato changes to short chain fatty acid when cooked, so it seems to have less effect if eaten cold or reheated, likewise pasta. Michael Mosley is also looking in to whether it then works as a pre-biotic, like inulin, with all sorts of other benefits. I'd love to find ways to eat potatoes. My brief research showed that if I had a very small portion in the evening it didn't have much effect on blood sugars. But an impulse portion of loaded fries one day at lunchtime sent bs from about 8 to 13 in minutes, folowed by a big plunge and it's these swings that make you hungry for more very quickly

[Toolie2]

Fascinating thread, thank you tangocharlie! And everyone else.

I came across the people on this website

lowcarbaction.org/about/

when I was anxious about a text from GP saying I was prediabetic. Looking at the before and after pics in 'Success Stories' on the website, and the improvements in health that seriously fat people have achieved is impressive.

I also enjoy following the participants of Dr Tro's community.

doctortro.com/.

There again, most have been extremely fat and suffered from diseases caused by obesity. Most are following keto diet, some are entirely meat based. They use CGMs for remote monitoring.

I started eating only meat, fish, eggs and dairy 13 weeks ago. I don't eat anything with flour in it and avoid vegetables and plants. I have always eaten lots of 'bad' fat and now I eat more. I'm counting on the amount of cheese and full fat cream, creme fraiche and yogurt I eat to help my bones. As well as the vitamin K2 in liver and chicken. I eat fruit with breakfast because I like it.

I feel really good and back to how I was before GCA happened 13 months ago. (apart from one eye!). I've been taking 5mg pred pd since February and waiting for an eye appointment before continuing to reduce. I'll use DorsetLady's slow plan.

I've lost a bit of weight and gained muscles, strength and energy. I don't get hungry. My blood pressure had been worryingly high since before I developed GCA. I tested it after 3 weeks on this diet and it came within normal range - a really dramatic improvement. Earlier this year I had tried a vegan diet in the hope of reducing my blood pressure, but it had had no effect after 7 weeks.

Catering for me is easy, but I try not to let my diet affect my husband and I cook and bake as usual for anyone else around.

My Rheumatologist seems realistic. He told me not to worry about the prediabetes. "It's minimal. GPs always react". His last letter to my GP said that my bloods were 'very good' at the last test, and that I am unlikely to reduce below 3mg per day.

So for the time being I'm sticking with my meaty diet. My energy, and strength had noticeably improved after only a week, but the phenomenal improvement has been in my blood pressure.

[PMRpro Ambassador in reply to Toolie2]

Do be careful though because cutting like that can lead to shortages of certain nutrients. And above all - fibre!

[Toolie2 in reply to PMRpro]

Thanks, PMRpro. Yes, I agree, I'd have thought so too. At the moment, though, I feel so well and don't feel I'm lacking anything...yet! Also, I've always wondered how Eskimo managed without having any greens to eat I think my mother used to tell me it was because they eat raw liver. She was keen on hardly cooked liver, which I found disgusting at the time, but now find it very palatable.

[PMRpro Ambassador in reply to Toolie2]

No - can ony cope with liver as Welsh faggots (very different from the north of England version) and occasionally liver sausage here but not always.

[tangocharlie in reply to Toolie2]

Wow. I've just responded to a post above about being totally carnivore. it seems an odd thing to me but from what I've read it does work for some people, often where all else has failed. If you're getting the results you want I'd be motivated to carry on doing more of the same.

[Toolie2 in reply to tangocharlie]

Hi, I must admit it seems quite ridiculous to me too! I found the idea amusing at first, and then thought it could even be worth trying. Now, I'm beginning to think plants might be more dangerous than we are brought up to believe. Not very seriously, but it's an interesting idea.

As you say, what works for one doesn't work for another. Hope you find the best way to continue avoiding more medication!

[Miserere in reply to Toolie2]

How is your digestion? That's the only thing that I am wary about. The only thing for me to do is to stick to it for a couple of weeks and then re-introduce things gradually. I do miss veg and feel 'strange' without it.

Also I suffer with osteoarthritis and am due a knee replacement. People have said it eases the pain so I really need to give it more time.

[Toolie2 in reply to Miserere]

Hi Miserere, my digestion works fine, but it always has really. I stopped taking Omeprazole in June, as soon as my consultant said I could. Don't know how he knew I don't have acid, but I still don't. I didn't know about stopping it gradually until I read it on here, but nothing happened to me.

I did get constipation for 2 or 3 weeks on this fibre-free diet, but that seems to have resolved itself now. This may be why people are advised to adopt this diet gradually and it could be less challenging than taking the opposite approach like you. Mind you, I didn't take that advice and just launched into meat eating one Saturday . I was gong to try it for 4 weeks initially but I felt so much better, and my blood pressure amazed me, so I carried on,

I hadn't seen your earlier post when I wrote all that, or I would have followed on from yours, but your experience over a few days does look promising. I do hope you find a way that's right for you and eases the pain you are in.

[pmr_nikola]

Interesting analysis. I may have avoided high HbA1c by chance because I took pred before sleeping, so it was already 7 -8 hours before I had first meal :). Never had issue and I live on carbs :). Beside normal meals with lots of carbs I indulge in sweets almost every day. I do exercise a lot and perhaps that is what keeps BS in check. 60-90 min walking every day and 4-5 moderate to high intensity endurance training. So I burn it. My weight has stayed within 3-5 lbs (of my usual weight) during PMR and now that I am off pred stayed the same.

[Thiago1396]

Thank you for this very interesting post. Having been diagnosed with PMR early May this year and having diabetes type 2 along with blood pressure, both under excellent control for many years, I was advised by my doctor to watch both carefully. I have a BP monitor and Diabetes finger prick testing kit, so I tested both 3 to four times a day on alternate days. Results were concerning, so I went on a lower carb and lower fat diet and found significant improvements. About a month or so later in a discussion with my diabetic nurse, she advised me to watch the period some few hours after taking my steroids, up to around 6 hours later, and I should see a significant incline, which should then drop off quite quickly. I tested for this in the following weeks and it was happening. So I avoided carbs during this incline and had my carbs for breakfast and my now later dinner time of around 7 to 8pm. This appears to avoid the 10+ readings I was getting prior to this and now I’m peaking no heigher than below 10. I get my next HbA1c test September/October.

[tangocharlie in reply to Thiago1396]

Interesting, thank you, that seems to tally with what I found. But I find if I have carbs for breakfast I feel hungry around lunchtime, so I'm best saving my carbs until early evening I think. I sometimes have some overnight oats with nuts and berries as my pudding after dinner rather than having it at breakfast.

[Thiago1396 in reply to tangocharlie]

I now usually have nuts, yogurt and banana (I need the daily banana for potassium) for breakfast. Not hungry too much for next 5 hours so have a light lunch, which sees me comfortably through to dinner. Seems to be working well. 🤞🤞

[tangocharlie in reply to Thiago1396]

Glad you've found a rhythm that works for you. My body seems quite happy without breakfast or lunch, but I get bored of not eating. Also I don't think I could get all the carbs I need in one meal, so should probably add in bits of things that don't spike my BS like cheese (I have a baby bel every day) nuts, other proteins. If I meet someone for lunch I'll usually choose things like avocado, smoked salmon and scrambled eggs on one piece of sourdough, or an ommelette and salad. Buddha bowls are a newish thing becoming more avaiallbe in sandwich shops and cafes, generally protein and veg. It's so hard to resist the fries, toasties and jacket potatoes though.

[pmr_nikola]

I know that carb are blamed often at this site and what I am going to point out may not be popular. Here it goes anyway...

Half of this planet population lives on predominantly carb diet ( Asia) and they have the least percent of obesity, much lower then US and EU. I would say that there must be a mistake to blame carbs and real reason is hidden somewhere else.

[DorsetLady PMRGCAuk volunteer in reply to pmr_nikola]

It’s not the carbs per se, it’s the combination of the side effects of Pred and some carbs…. .

Eat carbohydrates in the form of fresh fruits and vegetables. Prednisone has a tendency to raise the level of glucose, or sugar, in the blood, which can cause increased body fat or diabetes in some people. It is important to avoid "simple" carbohydrates and concentrated sweets, such as cakes, pies, cookies, jams, honey, chips, breads, candy and other highly processed foods. This helps keep blood sugar low.

[pmr_nikola in reply to DorsetLady]

Agree that is part of the issue... but it is not complete picture of reality. It is very complex and it boils down to lifestyle we choose to live. Even Asians that move to US develop similar problems, it is much more then just food we eat.

[PMRpro Ambassador in reply to pmr_nikola]

Possibly - but the Asians who develop problems tend to do so because they adopt the diet of where they move to. Those who continue to eat as they did before are less likely to have problems.

[tangocharlie in reply to DorsetLady]

Where is that an excerpt from please? Sounds good advice, though not all fruit, stick to apples pears and berries generally which are the low sugar ones, bananas, oranges have lots of good things in them but are very high sugar.

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

From this - sorry should have included previously -

ucsfhealth.org/en/education...

[tangocharlie in reply to DorsetLady]

Very useful, but mixed advice. eg saying eat more fruits and less fats, whereas it is possible good fats such as olive oil might reduce bs. We still don't know enough. There is increasing evidence that cholesterol (in some forms) may actually have a protective rather than detrimental effect. I've been looking for ways to reduce water retention but without having to take up things like bananas and raisins, which I don't like anyway. recently my GP has recommended occasional use of Furosemide, which seems to work, when I take it I lose about 4 lb in a few hours and a lot of the swelling in my legs goes down. I don't want to to take it very often because it is a serious drug that needs montoring if you take it long term, but he says occasionally is OK, and he says he has picked the brains of colleagues on this.

[tangocharlie in reply to pmr_nikola]

Asians, particilarly from Indian backgrounds also have much higher rates of diabetes which it is now thought to be connected with the carbs eg high rice and bread consumption rather than the creamy sauces and fats like coconut milk and ghee that it used to be blamed on. The Japanese tend to combine carbs and protein which means lower blood sugar than carbs on their own.

ncbi.nlm.nih.gov/pmc/articl...

[Louisepenygraig]

I've been interested in the Zoe programme for quite some time now and read the transcripts of some of their podcasts but the cost of their programme is far too high for me. I looked at again recently after I read a conversation about the effect of antibiotics on ones gut biome, but as I had surgery following my recent accident, I wasn't eligible. I had my blood sugar tested regularly once i was eating proper food in hospital and it was always fine. More recently though, at home, a nurse came out when I had a urine infection and a high temperature and measures my blood sugar while she was here. It was over 10 but I'd recently eaten a marmalade sandwich so I was happy that that explained it. (I don't normally eat things like that but I had a bad head which often gives me carb and marmalade cravings!)

[tangocharlie in reply to Louisepenygraig]

If you're interested in gut biome testing I'd recommend Chuckling goat. Sign up for their mailing list and look out for discount offers.

chucklinggoat.co.uk/product...

[Louisepenygraig in reply to tangocharlie]

Thank you, I will

[tangocharlie in reply to Louisepenygraig]

The initial testing phase costs about £300 I think, and the follow up depends on how many months you go for. Somehow I initially signed up for 4 months but have now changed it to 1 month as I know a lot of the theory anyway. So I think about £350 altogether. Not cheap, but then I've saved myself from having to go on diabetes meds and learned how to work best with my body while on Pred so I'm happy with that. I'm sure CGMs will be available on the NHS in a couple of years

[Thelmarina]

Wow! You star! Thank you so much for the time and trouble you have taken to outline your experience and give us some excellent information. Sooo helpful and so interesting ❤️

[tangocharlie in reply to Thelmarina]

Thanks, the main reason I did wa because doctors were, wrongly as I've proven, telling me I needed diabetes meds. So I hope I contribute to medical knowledge too.

[Hidden]

Wonder if you have tried your blood type diet, also you are correct carbs, starch, sugar really bad foods which I find makes me very ill having allergies (tested by nhs). A lot of nhs medications have lactose in them so I don’t take and boost my vitamins through alternative health shops although I can’t afford too but find it’s helping with my energy levels especially the B12 mouth spray as B12 nhs injections to hard to get an appointment with constant nurse shortages !

I also discovered I don’t have rheumatoid arthritis but Osteoporosis with my Lupus, after having my dvla medical so no reasons now that my Motability car/license taken from me other than the government fraud to get. 430.000 drivers off the roads this year.

Take care and hope all our health improves🙏

[tangocharlie in reply to Hidden]

i know someone wrote a book on eating for your blood type back in the 1980s but these findings were never taken up, so there is no proof whether the prescribed diet works or doesn't work. I'm surprised it hasn't been researched more. See this for example. health.harvard.edu/blog/die...

I hope you find a system that works for you and improves health/reduces inflammation, Lupus must be awful to cope with

[PMRpro Ambassador in reply to tangocharlie]

webmd.com/diet/a-z/blood-ty....

says

"One study found that adults eating the type A diet showed improved health markers, but this occurred in everyone, not just those with type A blood type. In 2013, a major review concluded that no evidence exists to support benefits of blood type diets.

It's likely that you would lose weight, though, because the diet can be very restrictive."

health.harvard.edu/blog/die...

says

"High-quality studies about the blood type diet had not been published in peer-reviewed medical literature. Even now, a search in the medical literature for the author's name reveals no research pertaining to this diet. Studies published in 2013 and 2014 about the blood type diets are worth noting. The 2013 study analyzed the world's medical literature and found no studies demonstrating benefit from a blood type diet. The 2014 study found that while people following any of the blood type diets had some improvement in certain cardiometabolic risk factors (such as cholesterol or blood pressure), those improvements were unrelated to blood type. Similarly, a 2021 study of a people on a low-fat vegan diet found no connection between blood type and lipid levels or other metabolic measures."

And here is the 2013 Review study

ajcn.nutrition.org/article/...

[Treetop33]

Really interesting, thank you. I wanted to do the Zoe study but am allergic/intolerant to one of their ingredients so bailed. I think it shows that docs need to be much more careful about handing out steroids along with proper advice about diet. When I was prescribed them, no-one talked to me about diet - I found out by myself.

Fascinating that there is a blood sugar spike 3-4 hours after taking them, which makes lunch a bad time to have carbs. Something to think about!

Another conclusion you can draw is that steroids are dangerous, powerful drugs, and while they are live savers, perhaps we might look to other drugs for some conditions rather than this flowchart approach the NHS has (start with the cheapest first, and work your way upwards).

Thanks again for sharing! x

[tangocharlie in reply to Treetop33]

Yes learning that what and when and how best to eat has been a life-changer. I'm so much healthier now and have lost loads of weight too.